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Mayo Clinic

Chordoma Community Conference at Mayo Clinic 

Saturday, October 15
Mayo Clinic Rochester

As part of the Chordoma Foundation’s ongoing efforts to bring the latest updates in chordoma science and care to patients and caregivers in their own communities, the most recent regional Chordoma Community Conference was held in partnership with Mayo Clinic at their Rochester campus on October 15, 2016.

More than 50 patients, caregivers, and family members attended the day-long conference from cities around the Midwest – with some journeying from the eastern and western US coasts, Canada, and as far as France. We were inspired to witness many new friendships form and the earnestness with which those who had attended previous conferences welcomed newcomers.

Chordoma experts representing a wide range of medical specialties from the Mayo Clinic, Dr. Tom DeLaney of Massachusetts General Hospital, and patient advocate Janis Ollson were among those who shared their knowledge about best care practices, latest advances in treatment, and ways to maintain quality of life.

Dr. Franklin Sim, an orthopedic oncologist, opened the day by narrating the long and rich history of chordoma treatment and research at Mayo Clinic. In his 40 years of experience at Mayo Clinic, Dr. Sim has witnessed the rapid progression in chordoma treatment techniques firsthand, and he noted the ways treatment options continue to evolve and improve.

Much of the day focused on the latest advances in chordoma treatment, with Dr. Tom DeLaney of Massachusetts General Hospital presenting on radiation, surgery, and drug therapies. Dr. Peter Wettstein offered helpful analogies about conservation biology and population viability to explain the principles behind immunotherapy, discussing the idea that working to target multiple weaknesses at the same time can help to eradicate a tumor. While immunotherapy for cancer treatment holds much promise, Dr. Wettstein emphasized the importance of identifying characteristics of each patient’s tumor and its potential weaknesses/targets on a case-by-case basis.

CF Executive Director Josh Sommer provided an overview of how the Foundation is working to find better treatments for patients by strategically investing in the resources needed to advance chordoma research. Josh also outlined the Foundation’s current research priorities, which include developing new chordoma cell lines, discovering new drug therapies that inhibit genes that drive chordoma, and helping to bring six new clinical trials to chordoma patients.

Dr. Amit Sood; Lisa Beck, APRN, CNS; and patient advocate Janis Ollson addressed quality of life concerns and the importance of communicating with your doctors and loved ones during and after treatment.

The afternoon’s Ask the Experts Q&A session featured eight panelists with expertise in the disciplines primarily involved in treating chordoma – orthopedic surgery, neurosurgery, radiation oncology, and medical oncology. The panel was moderated by Dr. Bob Lennon, a chordoma survivor and retired anesthesiologist who was part of the spine surgery team at Mayo Clinic during his career. Dr. Lennon posed a number of questions from conference participants and the wider chordoma community to his former colleagues, addressing topics such as receiving a correct diagnosis, treatment best practices, and advances on the horizon. The panelists repeatedly focused on the importance of being treated at multidisciplinary centers where the medical teams have experience caring for chordoma patients.

The day of learning wrapped up with a reception and guided tour of Mayo Clinic’s state-of-the-art proton beam facility, which opened in the summer of 2015. We were encouraged to see the attention and care given to the patient experience throughout the facility.

We are extremely grateful to our partners at Mayo Clinic for their hospitality and dedication to helping us improve the lives of those affected by chordoma. A special thanks is owed to Mayo Clinic course directors Dr. Michael J. Yaszemski and Dr. Ivy A. Petersen; Mayo Clinic administrators Cindy Hafferty and Michael O’Brien; and chordoma survivor Dr. Bob Lennon. Their time and efforts were instrumental in making this unique gathering possible.

The agenda, speaker bios, and photographs from the day are now available electronically. Videos of the conference will be available in mid-November, so please stay tuned for updates.